Autistic...I mean Awesome

Halloween is officially over, but before we move onto the holiday hub-bub I wanted to savor the memories of yesterday. For my daughter, dressing up is a breeze. She is excited, full of energy, and fulfills every expectation a parent can have.

With my son, we never quite know how the holiday will go. Each year the preparation of the costume is filled with stipulations (no tags, no hats or masks, no scratchiness etc.). This year was no different. My husband I begin with a pow-wow of what possible costumes fit into his acceptance. Then, we ask him what he would like to be. "A Chicken!" he shouts. OMG! For one thing, how in the world am I going to make a costume that resembles a chicken? For another, the texture sensitivity on this is going to be out of this world for him. So, I did a test and put on a very furry coat to explain that this is what a chicken is going to feel like. That did it...we settled on a red crayon.

I got my sewing machine out (keep in mind, I am no seamstress) and proceeded to create something that will excite my son and the population. I want him to attract all the compliments and attention he can (as I know that natural attraction is much easier for him). I share with you the fruits of my labor (above). With that said, I would encourage anyone to spend the $13 at

Wal-Mart to buy the cutest witch costume I have ever seen. The deal of the century for me and so much easier!

After the pair came home, they were both more excited than I have ever seen. My son will not eat (or try) an ounce of candy. For him, it was about the experience. He took each piece of his candy out of his bag and began lining them up and calling out their name (with my help):

"Recess!" - that would be reese's peanut butter cup

"Milk Shake!" - that would be Milky Way bars

"Baby Grace/Baby Ava!" (interchanging names)-

for Baby Ruth (he has cousins that we call baby Grace and baby Ava.

"Kitty Cat!" - Kit Kat

We were able to see him in the school parade and go to his class party with great success. This is a first for me. Historically, it has been an emotional disaster for all of us.

To top off the night, he stood up on the bed and said:

" Mom, I want to give you a hug"

(he is not a hugger and held both arms out and squeezed)

Today....Autism is Awesome!

MQT: Can you think of little gestures your loved ones do to help you get through the times when it is not so easy?

Investment

Is my answer to my previous post.

When a teacher, therapist or paraprofessional is personally invested in my son, I can be assured that they are working to make a difference for him. When I hear, "your son is such a joy" or "Ryan is so great to work with", I know that their help is going beyond a paycheck and the obstacles that arise will be handled with passion because of passion for my child.

For each of our children, there is no cookie cutter approach. If there were, we all would have answers, not questions.

My Question Today (MQT): Are you invested in something (a cause or person) more than just stocks? Can you see how heightend your passion becomes when an investment deals with the heart and not the wallet?

Stay tuned for: Team meeting thoughts and some cookie talk

"It Takes a Village..."

After a stressful week of working the kinks out with the bus, I have a good feeling about my son’s current team of school personnel. The quote that comes to mind, and now unfortunately associated with politics, is the popular proverb:

“It takes a village to raise a child”

In our case, this can’t be truer. Team Ryan consists of my son, a kindergarten teacher, a special education teacher, a paraprofessional, an occupational therapist, a physical therapist, a speech therapist, P.E. teacher (we get extra help), Aqua therapist, bus driver, principal, peer mentors, me, my husband, and my daughter. All are individuals who have daily interactions with my child for the success of my child. This doesn’t even include the support of our family and friends (I need to mention them or I will bear the wrath of my mother), and oral motor therapist, nutritionist, music therapist, pediatrician etc. It is amazing, challenging, and inspiring.

Why do I think we have such a great team? Tune in. I have a great reason.

Today’s Question: Do you consider yourself a team player or are you an exclusive member of your mission in life? For that matter, do you have a mission?

Kindergarten Kid

We have survived the first day of kindergarten.

It was not without anxiety. Transitioning is hard for any child (and parent). For our son, it has always proved to be difficult. So when the bus came and Ryan was unable to find a seat, it was at that moment I knew we were in a bit of trouble. He was a lost puppy.

I had tried to prepare him for his new school. We had a book made (called social stories) to include pictures of school, his teachers, and his classes. I took him to the new school playground, at least twice a week to get comfortable in his new surroundings. I hoped it would also provide a feeling of confidence and make it easier for him to “fit” in with his typical peers. We would talk about kindergarten and all the new friends he would make. Could I have done more to help him?

I had not thought about the bus to school. This could be a deal breaker for him. It is unbelievably disorganizing to a child with special needs. There is no routine. It is loud and unsettling. As Ryan road away, I was beside myself with worry. He looked straight ahead, scared at the uncertainty of it all and put on the bravest face he could. I went home and wept. Not so brave.

I wish I had a magic wand and “pressdough” all our anxiety is gone. The good news is that we have a great team of school personnel to help us through.

Today is done. I look forward to each new day. For Ryan is my teacher and I learned about what true bravery is. I can’t wait for another lesson tomorrow.

Question: What do you learn from the children in your life?

A Bucket of Rocks

Today, I went to visit my son’s kindergarten class. He will begin school tomorrow. In his eyes, I saw the apprehension and anxiety of starting this new phase. He is scared and I can’t blame him. I am too.

After coming home, I sat in our backyard watching my son throw his “collection” of rocks from a recent beach trip, into the marsh (we have tall reeds as part of a conservation area). With each rock, I began to imagine he was throwing his feelings of fear, apprehension, and anxiety away. The higher and farther the toss, the longer it would take for those emotions to creep back.

There is always humor to lighten the load. While searching for a pic, I found this "bucket of rocks". It gave me a chuckle. I hope it does the same for you.

Today's Question: What would you throw away with your own rocks?

Today's saying: A cookie a day keeps the fears away. It's all good.

Picketing Playdates

What happened to spontaneity?

I can't stand that there is never a ring at the door bell to ask for "Johnny" to come out and play. A friend will never just stop by so the kids could play and we could chat.
I know for a fact that most of my neighbors, friends, and even family would be mortified by such a ripple in their routine waters. Everyone is so stuck on making sure their house is in pristine order before exposing it to others that we have lost what is really important...connecting with each other.
We all have children people! Toys will be on the floor, dishes in the sink and pee is probably around the toilet bowl. Yes, of course I try to keep all of this to a minimum (for my own sanity), but I am upset that it may even cross my mind to think about how my house may look with a stop over visit. The peer "motherhood" pressure bears its ugly head.
I am trying to get back to the basics. With a child on the spectrum, a scheduled playdate may be necessary to prepare my son. A scheduled playdate is necessary for safety (if the other mom needs to drop off their child). Other than that, I am picketing playdates and wish for the "old" fashioned days to return.

As children, were you too busy to play in the neighborhood? As children, did you run over and ring the door of your neighbors house? As children, did it seem simpler, maybe even happier?

Back to School Shopping

Here we go again…a new wardrobe of clothes for kindergarten.

I am sure I am not alone in the problems I have finding the perfect clothing for my son to wear. His texture sensitivities often lead me to send in unwanted clothing to his occupational therapist for her to try her methods. His sensitivity creates a whirlwind of uncertainty every morning. Though I try to pick out a couple of every item he needs to wear, we still sometimes get more than we bargain for at 7am.

Every tag needs to be cut. Thank goodness for the new tagless versions of clothing! Collars are not a favorite and often unused each season.

From summer to fall, we have struggles going from minimal clothing to layering. Whenever my son gets the opportunity, shoes and socks come off. Every item I buy is a gamble. What is a mother to do?

To find some sort of relief, I've come up with a formula that my son (or me) may find useful to determine likable-ness that may go something like this:

"Color + style (no collar or button downs) + tagless+ softness + character/emblem + fit + familiarity + buttons, zipper, pockets + movement sound (preferably none) + tightness of elastic (in pants)= “might” wear clothing"


Similar to the law of physics, this may be an impossible task. On the upside, at least I won't have to worry about him nagging me for any items of popularity when he gets older.

My question today: We all probably have some formula that we live by. What's yours?

Autistic Child Voted Out of Class??

Okay, I have to calm myself down because I am so disheartened by this event. This morning, I caught a glimpse of a story indicating that a autistic child in kindergarten was voted out of his class in Florida. What is wrong with society? After reading the entire article, it occurred to me that this child they were referring to "became" my own son. He is going into kindergarten next year and,as I was thinking and reading, I was becoming personally involved. I am horrified that an adult, especially in the educational system, would even remotely think that this was approriate to do to a 5 year old child. As a mother of a special needs child, I now know that I cannot rest until there are changes made, awareness understood, and a greater sense of empathy for the special needs. In breaking my thoughts down, I see 3 areas of concentration:
1. The education system - We have come a long way since 20 years (even 10 years) ago, but we obviously need to do more. I hope you all follow, support, and act with me as I lead by example. I would be a hypocrite to my son if I only expected him to work as hard as he does and not do the same for him.
2. The responsibility of community - Creating community awareness is one thing. Making our communities accountable for eachother is a challenge. Autism, or any special needs individual, is an important part of our daily living. We all need to take responsibility and take action. The special needs community can be helped, and more importantly contribute to society, if given the tools, education, and acceptance that we (the typical person) is allowed.
3. High profile and business Involvement/Investments - Businesses, people, and new ideas need to jump in to make change possible. We all have heard about the best investment we could do is to invest in our children.
Today's question: Ask yourself if you or your business invests in ALL children (not just the easy, typical, uncomplicated children)? Do you invest energy and resources into the special needs children of this world? Does the PTA in your school work with the special ed PTA to create a partnership that contributes to the educational system?

For me, I am saddened by the ignorance and sheer thoughtlessness of even one teacher making such a mockery of a little child. This is one teacher too many. I wonder if there are others.

Are You A Mother Goose?

This morning I went to a hair appointment. While in the chair, outside the window, there sat a "mother goose" sitting on her eggs, awaiting the arrival of her ducklings. The hair shop has named her Irsula. Guarding her most precious creation, she sat so stoic, grabbing a branch here and a branch there to build her home. The true form of a "nesting" mother, it brought a tear to my eye as I think about my own children. From my observation, I found out that I am a, "full-on", mother goose.
From the time my son was born, I have rarely left his side. Diagnosed with a heart condition, we had him transferred to a hospital in NYC where they performed surgery on him at only 5 days old. The hospital was so frustrated with me because I required round the clock supervision, by either my husband or my mother, in order for me to leave my child and go get the rest I needed. The nursing staff was more than qualified to care for my son, but I needed to have him "feel" that there was someone right by his side that loves him and will protect him. Well, almost 5 years later, the mother goose in me has not changed.
My son was diagnosed with autism spectrum disorder at the age of 18 months. He did not speak an intelligible word until almost 4 years old. During that time, we used pictures and my gut, that voice inside of me, to know what he wanted or how to help him. Though he is doing phenomenol, he is entering kindergarten and mother goose (that would be me), is still hovering with passion, concern, and hope to make sure he gets what he needs (therapy wise). Oh the poor souls that have to deal me. When it comes to my kids, I am a passionate person and no one better mess with them.
So for today, the question I ask:
Are you a mother goose or a goose that happened to become a mother?